All About Moms, Mom You Rock Show!
As promised, here are the stories I read last night for you to re-read yourself when you have a quiet moment:
A Mother’s Love: moving on
Shannon wrote in about her son, Jonah, who lost his life to Wilms tumor when he was 7 years old. It was a tough ordeal for the entire family. She shared with me these comments:
“I think that any mother would agree that the first time you hold your child, you feel real love for the first time. Sure, we love our family and friends, but this is different. It’s the greatest feeling you will ever feel. But, when you have a child that has a life threatening illness, there’s even a greater love. I haven’t nor will I ever want something so badly. All I wanted was for my son to recover.”
“Mother’s Day used to be my favorite holiday. I loved spending that day with the two people I love the most, my children. This will be my third Mother’s Day without Jonah. I now spend that day by going to the church that Jonah loved.”
“My life has been forever changed since that Friday night, September 2, 2005. Jonah taught me how to love and how to live. He taught me that there is definitely a Heaven. Without that, I don’t know that I could go on. I still cry every single day. I still have days when I wake up in disbelief that he is really gone. I dream of the day when we are reunited. I love you, Jonah!”
A Teens Final Gift: Life is About Living
Lacey sent in this story about her daughter, Amber, who is now an Angel. It’s not just a story of a mother’s courage and grace, but a story of the strength of children helping their parents through the worst of times at the most unexpected of moments. You may need tissue for this one!
“My daughter Amber changed my life irrevocably. She was special right from the start, because she was mine, because I finally knew what love was, because she made me grow as a person, and experience life through fresh eyes.
As a mother you often think that you would be willing to do anything for your child. Few mothers are actually put into a situation where this is put to a test. Amber was 13 when she was diagnosed with cancer, Osteosarcoma to be specific. She was 14 when she passed away. Seven months from diagnosis to death. I watched my only child suffer pain, surgeries, the loss of privacy (within the hospital), and I know with certainty that I would gladly have suffered and died for her if it would have meant that she would live.
The loss of Amber meant no future, no college, no first kiss, no prom, and the list goes on of all the things she will never get to experience. The experience and her life were not in vain because I no longer take people or time for granted…I can’t because I know now how fleeting it truly is.
She lives on in my heart. When we were told that there was no more hope and Amber only had a couple of months I told her that I would cry every day when she died. She told me that I would not, and although tears have not fallen from my eyes every day my heart and soul cries for her and the loss of her and the wonderful adult she would have been. I cried so much after we were told, Amber asked me not to anymore because she did not want us to waste her final days being sad – she wanted us to enjoy ourselves together. What maturity! I love her so much that I feel that I cannot do her justice with my words. She truly was one of the greatest people I will ever know. “
A Mother’s Strength Across the Seas: The Morrings, Ballina, Ireland
This is the story of a 12 year old named Caoimhe (KEEVA) and being diagnosed with bone cancer – but it’s really the story of her mother’s intense determination to not give up and bow to the pressures of mediocre medical care. Her mom, Maureen, wrote me in great deal about what she had to go through to get her daughter the care she needed and it shows just how far a mother’s love will create the determination needed during the darkest of times. Let me give you the highlights of this amazing family’s journey.
Maureen told me they live in the west of Ireland, four hours from the national children’s hospital, the only hospital in the area for pediatric oncology.
Caoimhe story began in September 2007 when she developed lethargy and pain. She was checked initially by a local doctor and then by a pediatrician at a local hospital who did a full workup including a battery of blood tests and xrays, including a MRI. Maureen was told she was fine but 6 weeks later Caimhe developed arm pain and again had to be seen at the local hospital.
Here’s where the story becomes heart breaking! Maureen wrote: “They looked at her thick chart full of investigations and the fact she had a MRI on her chart, told me she may be suffering with mental problems, and then proceeded to interview her on her school friends and home life. I lost it! And, then demanded they look at what she was presenting with.. a sore arm. Eventually, after I had a meeting with the Sister in charge they agreed to x ray her arm!!!! (to keep me quiet i think!!!) After the x ray, the orthopedic team kicked into action and the lady in charge of that section of orthopedics had a good look and told us before we even had biopsy that she though it was a tumor.”
Caoimhe’s course from here was challenging. A break of her bone during the biopsy procedure went undetected causing her intense pain and a fever once she was home. By the time an orthopedic doctor finally evaluated her at the local hospital, her parents had lost complete faith in that system to help their daughter. In her words: “I jumped on a plane one morning from the hospital leaving my sick little twelve year old in the hospital in the care of friends as I sought a second opinion across the water in Birmingham (England). Her dad continued working and a charity group helped with the childcare arrangements.”
Despite chemo being tough ordeal for all, Caoimhe is back at school with a “great shoulder” and a mom very proud at how her daughter has handled the situation. She very much wanted me to air this story. In her words: “I would not mind being on the program – at least parents would know its a worldwide challenge.”
“I’m bigga and stronga than can-ur.” A family’s “life is beautiful” approach a gift to all.
Kimberly writes:
“Our son, Jonah, was diagnosed with AML (acute mylocytic leukemia) just six days before his third birthday. He came home from the hospital on his third birthday after his first round of chemo with “Mr. Hickey”, his IV Hickman catheter. We took the “Life is Beautiful” approach to cancer.
We changed Mr. Hickey’s clothes every day, not that it made it any easier to hold down the Tasmanian Devil. (We actually waited for the police or DHS to knock on our door, but they never did!)
When Jonah had low platelets, we even made that fun. It would be a contest to see how long of a bloody string he could make. We have a picture of him with the biggest smile on his face holding onto something that still grosses our friend out. But he never knew it wasn’t a blast.
On the first day he was diagnosed, we all came up with his motto. He couldn’t say his R’s, so his slogan was “I’m bigga and stronga than can-ur.”
The hardest part was being honest with the children at all times. His sister, Emilyn Grace, was 7 at the time. And when she asked her Daddy, “Is Jonah gonna die?”, it was very hard for both of us to tell her that he might – but we were going to everything we could to not let that happen.
When Emma and Sam (then 4) found out they were both matches to give Jonah the bone marrow that could save his life, it was hilarious to see them both pointing at each other saying “They’ll do it!” Whatta hoot!
Well, the bone marrow transplant worked. Jonah and Sam are now almost 10 and 11. And every time they get into a brotherly fight, Sam comes back with “You owe me big time.” Being the parent of a child with cancer isn’t a club you ever want to join, but if you just keep looking for the blessings, they are always there to be found. My heroes are the Eley family in Denver, CO. Their son, Brent, died of complications of a bone marrow transplant. Instead of crawling into a hole and letting that destroy their lives, they founded Brent’s Place, a Ronald-McDonald-type, clean-safe apartment complex for children undergoing cancer treatments at Denver Children’s Hospital. Although we were fortunate enough to be able to keep Jonah, we always made the promise that if we lost him, we would not dishonor his short, precious life by being bitter. And while we will never be able to return to the safe place we were before he was diagnosed, Jonah’s cancer experience has made a stronger, more appreciative family – So it really was a gift. Thanks much for putting some attention on this. Most folks just freak out when you tell them your child had cancer.”
Old Fashioned Women Power!
Jennifer writes:
“My 3 year old daughter Lily(now 4) was diagnosed with adrenocortical carcinoma and a rare plexiform histiocytic tumor in October 08. We are almost done with chemo and are managing side effects. It has been a long, at times familiar journey. Our family has Li Fraumeni Syndrome and has been wracked with cancer. My brother, father, cousin and grandfather all died from brain tumors. My grandmother watched all of her 5 children battle various cancers after losing her husband, 3 have lost their battles. My mother and Aunt both watched their sons die from this disease.”
I asked Jennifer what advice she has to other moms going through such a tough day to day battle, or any life hurdle. She told me by email: “My advice, though I don’t take it as often as I should- Ask for help. Let people around you know what’s going on, either via blog, email, or Caringbridge.com. Reading others’ stories helps immensely, knowing you are not going through it alone. My friends set up a website where people could leave notes of inspiration and even make donations to help with all of the miscellaneous costs that come along with having a sick child. I can’t over estimate the value of kind words and ready made dinners given by friends and even strangers during tough times.”
Finally, Jennifer notes that it’s the women in her life who have been the most support of all. In her words: “I have found fellow cancer moms online and others have found me through my blog of our journey. To the amazing moms who have given me the strength to fight this battle and to those who have fought before- win or lose, I wish them all a Happy Mother’s Day- they have made all the difference.”
A mom pushed to her limits recognizes that even sick kids are still just kids – and appreciates life’s gifts this mother’s day
Andrea writes:
Dear Dr. Gwenn,
Thank you for thinking about mom’s of sick children. I really don’t find myself to be anything special. I am burnt out, cranky and less understanding than I should be. I am feeling like I have been pushed to the limit. “God doesn’t give you more than you can handle” is a very popular saying by people who have never been in your shoes. My daughter is in her first year of remission this month. Diagnosed in Feb of 2006 with ALL following 27 months of treatment. Although she does not have ALL anymore she does have other problems, age being one of those – she will be 10 May 15th. Some days it seems it just never ends. I am sure there are moms out there that feel like I do and their child isn’t sick. Today has been a very hard day. Maybe that is why I am so negative.
So on a positive note- I am very lucky to be a mom at all. Having both children in my 30s with endometriosis, I never thought it possible to have one let alone 2. My daughter was the most healthiest kid until the cancer. She has taught me how precious again they really are. She has also helped me see the undesirable traits she has received from me. She has shown me that God loves us so very much and really hears our inner most prayers and thoughts.
Again thank you and Happy Mother’s Day to you and all your listening moms.
My Valentine: a story of hope, courage and inspiration to all
Jackie Ellis, Parent,Executive Director, Base Camp Children’s Cancer Foundation
Winter Park, Florida
Jackie writes:
“February 14, 1996. I will never forget that day. My life was changed on that day. My daughter Simone was 9 years old and as I picked her up from school I was wiping the chocolate from too many valentine candies and the dirt from too much fun on the playground from her face. I rubbed her cheek and felt a lump on her jaw. The minute I felt it I was filled with fear. I got a knot in my stomach. I took her straight to the pediatrician. Initially they thought it was a simple ailment, cat scratch fever they thought.
But after it didn’t go away with antibiotics tests were ran that changed our path forever. Simone was diagnosed with a rare disease called aggressive fibromytosis. This disease is what was once explained in layman’s terms as “your body making scar tissue without a wound”. This disease had formed a “tennis ball size” tumor in my daughter’s head. The tumor had formed just below the base of her brain and extended up to her jawbone. The “marble size” tumor that we saw on her jawbone was just what we could see on the outside. The majority of the tumor was hidden from our sight.
This discovery was 9 years ago. Simone has since had 13 surgeries and 4 rounds of chemotherapy. I know this sounds like a story of despair and devastation, but it’s not! It’s a love story, a story of love of God, family, friends and self. It is often said that in the worst tragedy a blessing comes. It’s true. This “journey” has healed relationships, made bonds that never would have seemed plausible and strengthened our faith in Christ.”
Jackie offers some “practical, get through the day advice” that I’ll give you the highlights of now but post the full text on the companion page:
1. Recharge your batteries often.
“This is for both you and your child. Having a child with health issues is very difficult. You are faced with trying to take care of them and keep things as normal as possible. This can be close to impossible at times. Take time to “come up for air”.
• Plan activities for your child that will push them to the limit of their abilities. This helps them to feel normal and gives them confidence that you feel everything is going to be ok.” For example, she and Simone do something each month that other teens do with their moms.
• Also find an outlet for your child to “feel normal” in. Because of their illness they can often feel different. Camps, support groups, etc.
• Recharge your batteries: “I take time to recharge my batteries by taking classes, working on my degree. It’s hard, I’m old, but it totally takes my mind off of myself, my worries.” “Find something, a hobby, volunteer, singing lessons, something, I PROMISE you will be a stronger more positive person for it.” I think this is true for all moms, actually!!
2. Enlist the help of friends and family.
“Don’t try to handle this alone. When my daughter was first diagnosed I was so overwhelmed that when the doctors talked all I heard was a sound like a phone ringing! I could not comprehend what they said! Oncologists, radiologists, cranial facial specialists, neurologists, gastro-enterologists, the list was endless. And they all spoke some type of “doctorese” that I was never going to understand. I called my brother and said “ there’s something wrong with my baby and I don’t know what they are talking about”. He came and went on every doctor appointment until I could get a grip and handle it on my own.”
“When friends, neighbors, and coworkers ask what they can do to help, tell them!”
Make means, schlep the kids. She writes: “This is an opportunity for you to lighten your load and it’s real important that you take advantage of these chances. Somewhere along this journey you will come to the realization that this is not a sprint. This is a walk, a change, and a new life.”
3. Enjoy everyday. Laugh.
Jackie notes: “This one took a while. I was so devastated, so depressed. I was focused on the chemotherapy, the fear of re-growth of the tumor, and the toll it was taking on my daughter. I was driving in my car one day listening to my favorite Christian Radio Station; when the motivational speaker said, “When you don’t know what to do next, just do the next thing”. It was right then and there that I said, “Ok, I can only take this thing in little bites”. I started to not worry about what was going to happen next but to just enjoy the moment I was in. That was the most freeing thing that has ever happened to me. It was like a stone was lifted from my heart. That day I laughed again. I felt lighter and calmer. I started to let life back in.
It may be difficult and seem strange but it is the BEST thing you can do for your child, yourself, your family. Simone loves to see me laugh. She has a wonderful sense of humor and it shows everyday. Encourage joy and laughter DAILY. We laugh about her treatment! There’s humor in everything, find it!”
4. Read Inspirational Material
“I’m a Christian. I know for sure that I could not have made it in this journey without my faith.” I’ll add that there is a lot of evidence that belief in something makes us all stronger and healthier. You don’t have to be religious to read inspirational material. Find what works for you, even while your kids are healthy.
Jackie’s Update: This was written in 2005, my daughter is now 23, married and the mother of a beautiful little girl. She is STILL receiving bi-weekly chemotherapy.
Nana Banana Cornflake’s Biological Clock’s Call
Nana writes: “~~People would ask me, “how can you love another person’s child like your own flesh and blood”. My response, “Try It”.
It was early Fall in 1999 and feeling sorry for myself because all my friends had grandchildren to brag about, I opened up the phone book and called adoption agencies. I needed a grandbaby to love. When they heard my age, they asked if I would consider a teen ager. Even though I felt guilty, I had to decline.
After 7 agencies, the 8th one was promising. Their yearly meeting for adoptive parents was the very next evening. I was so excited. Yes, I would be there.
After hanging up, I realized I had to be at the airport to meet a friend. I called my daughter who was trying to conceive after two miscarriages and told her she needed to go to this meeting for me. She was put out with me as she was not interested in adoption or having me adopt a child. I was persistent.
Well, she attended the meeting and brought home mounds of papers to be filled out and told me to hang it up forever as their were two hundred couples ahead of me/us and only a few babies available in the next 6 months and it could take 2 years for consideration. She mentioned the babies available were two Hispanics, two Caucasian and one Asian baby. She believed the Asian Baby was due on Thanksgiving Day.
We filled out the paper work but my daughter assured me this was all a big waste of time as we were at the bottom of the totem pole.
We had home visits and letters of recommendation and FBI/Criminal checks , etc. etc. etc. etc. We attended more meetings.
Over and Over again, I kept thinking of the Asian Baby and wondered if it were a boy or a girl. That Thanksgiving Day, I prayed for the Mothers that were giving joy to others by placing their babies with those who could give their child a good and loving home. I wondered if the Asian Mother had given birth and what the sex of the baby was.
In January 2000, we got the call. A little Asian Girl was born in November and had been hospitalized and needed a Mama and a Grandma. She needed special care but was well enough to go “home”. We were screaming in delight. Yes we would all be there at the hospital, early the next morning. My husband ran to Target for diapers and Onesies and baby bottles and a blanket. My daughter who lived on the other side of town was also at a store buying baby items. We would meet her at the hospital at 7:00AM. I did not sleep that night. I laughed and cried and Thanked God for this child.
Morning rush hour was horrific and we were 5 minutes late. We literally ran up to the 4th floor to meet our daughter. We got off the elevator and at the very end of the hall, I saw my daughter with a bundle in her arms. She saw us and came running down the hall with baby in arms and she placed the baby in my arms. I do not know who was crying more. We all were bawling tears of joy. The baby had lots of black hair that spiked everywhere and had a big smile for us. She even cooed. She knew she was going home.
Our beautiful gift from God is now 9 1/2 years old. People say, how blessed she is to have us. Oh No! It is just the opposite, “we are so Blessed to have her”. She is the JOY of our lives. She adores her Papa (my husband) and they are the best of “buds”. She calls my daughter “Mommy” and I am Nana Banana Cornflake.
Mother’s Day is a very Special Day…..My daughter never did conceive and she thanks me every day for making that call.
Meanwhile, my son has given us two precious grandchildren and they moved back to our town. They all play well together and all attend the same school.
I am so proud and so very happy. My cup runneth over with Joy. Does anyone care to look at my Lil photo album that I carry in my handbag? It is covered with Love and Happiness.
I wish all Mothers and Grandmother’s all over the world a Wonderful and Blessed Day.
We will all be together on Mother’s Day. The children are baking a cake for us. ~~
Sincerely,
A very proud and blessed, Nana Banana Cornflake”
Nana Banana and I swapped a couple emails. She sent me a picture of Carolyn at Disney that is truly precious – if only I had a way to show you that via radio!! I mentioned to her that her story is a wonderful reminder that love is thicker than blood where family is concerned. She had this to say in reply:
“Yes, Love is thicker than Blood when parenting. The way we raise the little one is quite different in how I raised my children 35 years ago except for the Love. Years ago, I was busy…always busy and did not read as much as I do today. Did not play as many board games as I do today. Did not go to the Park as much as I do now. Did not have the talks back then that I relish having now with the little one’s.
We had babysitters back then and now the kids go everywhere with us. It’s a given. We never have to worry about babysitters. It is understood…Kids go with us or Nana Banana has all of them. AND Kids are so much smarter today then back then.
I am so grateful for the opportunity to relive those days of yore again. “
I ended the show with Christine Kraft’s Mother’s Day Dare. I dare you to read it…and when you do you’ll understand why this is what being a mom is all about:
“You are a wonder in this world!
A very special blossom
Too beautiful for a vase on Sunday
You have bloomed where you were planted …”
Music for the show: Garage Band
Next Show:
Wednesday May 13, 7:30pm EST: Hot Off The Presses Study Update
Comments are closed